Sexuality, disability and
human rights: Strengthening healthcare for disabled people

The World Report on
Disability1 by the World Health
Organization and the World Bank marks a watershed in the
history of how disability should be understood by healthcare
practitioners. Along with a special issue of the Lancet,2 this report marks recognition
by organised healthcare that healthcare practitioners acted
paternalistically towards disabled people, often deciding on
their behalf what is in their best interests.3 South Africa favours a human
rights approach to disability, where the Constitution mentions
non-discrimination on the grounds of disability, and globally
through the promulgation of the United Nations Convention on
the Rights of Persons with Disabilities (UNCRPD).4 Historically, health
practitioners have underestimated the capacities of disabled
people and from clinical encounters view disability as an
illness, whereas in reality most disabled people are not ill.5

This change in how
disability is viewed changes the ways in which interactions
between the health professions and disabled people are seen.
An optimal emancipatory approach gives maximum choice and
control to disabled people in all matters in their lives,
including health. This is especially pertinent in the field of
sexuality and disability.6 Health professionals have been
seen as complicit in denying disabled people their rights to
sexual expression and sexual choices, and in perpetuating
myths about disabled people. On the one hand, disabled people
have been viewed as asexual or as eternal children, and on the
other they have been viewed as sexually rampant and unable to
control sexual impulses.7 However, the new emphasis on
sexual rights as part of human rights for disabled people may
create dilemmas for clinicians caring for patients who are
disabled, especially in South Africa in the context of high
rates of sexual violence and of HIV/AIDS. The magnitude of the
HIV/AIDS epidemic forces clinicians to think critically about
the sexuality of disabled people and how the epidemic affects
them.8

Ethicist Jacob Appel holds
contemporary views of the right to sexuality and to sexual
liberty for disabled people:9 ‘Sexual rights are a
fundamental element of human rights. They encompass the right
to experience pleasurable sexuality, which is essential in and
of itself and, at the same time, is a fundamental vehicle of
communication and love between people. Sexual rights include
the liberty and autonomy in the responsible exercise of
sexuality.’ Researchers and healthcare practitioners
corroborate these views. Murphy and Elias,10 who are experienced
paediatricians based in the USA, suggest that all
paediatricians who treat children or adolescents with
disabilities ‘introduce issues of physical, cognitive and
psychosexual development to parents and their children at an
early age and continue discussions at most visits throughout
adolescence and adulthood’. They also advise that parents of
young people with developmental disabilities ‘optimize
independence, self-care, social skills and developmentally
appropriate sexuality education in home, community and school
settings’. Eastgate,11 a family practitioner in
Australia, suggests that disability organisations assist in
providing education to young, disabled women, particularly in
menstrual management, hygiene and sexuality. In the UK there
have been efforts to support disabled parents, acknowledging
that disabled men and women also have the right to experience
parenthood.12

The Western Cape Forum for
Intellectual Disability (WCFID) has produced manuals to guide
sexuality and HIV prevention education for intellectually
disabled adults and adolescents. These acknowledge that
sexuality is core to the experience of being human and that
people with intellectual disabilities have a right to a
positive sexuality. The manuals illustrate with adequate
visual resources, appropriate sexual expression, access to HIV
testing and how to disclose sexual abuse.13

While it is easy to exhort
practitioners who work in primary healthcare or in services
focusing on HIV/AIDS or sexual health to be more open about
disability issues, they may face many challenges in attempting
to do so.

Clinician discomfort.Many people, including
clinicians, feel uncomfortable discussing sexual matters,
discomfort which may increase in the context of disability.3 Mgwili and Watermeyer3 reported that physically
disabled women accessing family planning were treated as if
they were asexual by clinicians, who berated them for being
sexually active. Disabled people are well aware of this
discomfort. Wallis14 expressed his experiences as a
person with muscular dystrophy: ‘The issue of sexuality and
disability is in the main brushed under the carpet. Some of my
carers have been visibly embarrassed when sex has been
mentioned or shown on a TV programme we have watched together.
The general public do not view disabled people as sexual
beings and many professionals and family members who are too
uncomfortable to address this issue openly share this
attitude. Strangely, talking to people – especially parents
and carers – about death and dying may be easier than talking
to them about sex.’

The solution to this issue
goes beyond educating practitioners, as researchers in a
similar field have shown. Kai et al.15 reported that, paradoxically,
as a group of clinicians in the UK learned more about the
importance of cultural sensitivity in healthcare, the less
confident they felt in managing cross-cultural healthcare
consultations, partly through fear of violating cultural norms
of which they had recently been made aware. There may be
similar challenges for clinicians in dealing with issues of
disability and sexuality – the more practitioners are made
aware of the legacy of patronising and inappropriate attitudes
towards the sexuality of disabled people, the more difficult
they may find it to intervene, for fear of perpetuating a
legacy of oppressive healthcare.

Fear of encouraging
sexual activity.Rohleder and Swartz16 found that educators of
disabled youth were not opposed to delivering sexual health
education to youth with disabilities; nor did they wish to
deny them capacity for a meaningful sexual relationship.
However, they were worried that if they distributed condoms to
these young people, this would precipitate high-risk sexual
behaviour. Similarly, Collins17 found that clinicians working
in mental health services would distribute condoms to patients
they believed were already sexually active, or who had a
sexually transmitted infection or had been sexually abused.
Condoms were not distributed to patients whom they perceived
to be too ill to use them, and they were also concerned about
encouraging sexual activity.

Worry about risk of
sexually transmitted infections, HIV risk and death.Particularly in the case of
people with intellectual or psychiatric disabilities, or with
other forms of brain pathology that may affect planning and
judgement (temporary, intermittent or permanent), clinicians
may worry that supporting sexual rights may expose people to
potentially life-threatening risks. It is often difficult for
clinicians in the short time they have with patients to assess
their capacity to take responsibility for their sexual health
and that of partners, or the context of support patients may
have around sexual health. Worry about sexual risk may
encourage clinicians to err on the side of over-protection as
the safest route to take.16

Cultural and religious
norms.Many disabled children and
adolescents attend schools that have a religious ethos. For
example, Mall18 found discomfort about condom
education in schools for deaf and hard-of-hearing adolescents
that had a Catholic ethos. Some educators in Catholic schools
thought it was important to uphold their ethos in their
teaching and therefore did not conduct condom demonstrations
or educate about condom usage during Life Orientation or sex
education. Clinicians working with disabled people must take
this into account. and may have to confront and consider their
own cultural and religious views on sexuality and whether they
affect their care for disabled people.

The role of
institutions. A
problem with providing appropriate emancipatory sexual
healthcare for disabled people, including adults, is that they
are more likely than others to live in institutions. Although
many institutions engage proactively to support the sexual
rights of disabled people, others have a long way to go.
Clinicians may experience conflict between their own views
about sexuality and those of the institution, and may not wish
their patients to come into conflict with staff who have
considerable influence over their lives. Even where disabled
adults live with their parents or other family members, these
relatives may wish to prevent them from having sex, and this
may result in conflict with health professionals.19

Conclusion

Healthcare practitioners
face dilemmas in providing sexual healthcare to disabled
patients. Although the HIV/AIDS epidemic has forced critical
thinking about some of these issues, obstacles remain to
encouraging a completely emancipatory approach. A balance must
be sought, given that disabled people have a right to a
healthy sexuality and should be advised of the risk of sexual
abuse and HIV infection. The clinician’s own discomfort is a
large and hidden issue, occasioned not through individual
failings but through socialisation, which affects many people.
We suggest that clinicians who face dilemmas regarding the
sexual rights and responsibilities of their patients discuss
these with colleagues. Clinicians may need to support one
another in treading the difficult path between promotion of
rights and protection of vulnerabilities.

Sumaya Mall

Leslie
Swartz

Department of Psychology

Stellenbosch University

Corresponding author: S Mall (sumaya.mall@gmail.com)

1. World
Health Organization and World Bank. World Report on
Disability. Geneva: WHO, 2011.

1. World
Health Organization and World Bank. World Report on
Disability. Geneva: WHO, 2011.

19. Cuskelly
M, Bryde R. Attitudes towards the sexuality of adults with
an intellectual disability: parents, support staff, and a
community sample. Journal of Intellectual and Developmental
Disability 2004;29(3):255-264.
[http://dx.doi.org/10.1080/13668250412331285136]

19. Cuskelly
M, Bryde R. Attitudes towards the sexuality of adults with
an intellectual disability: parents, support staff, and a
community sample. Journal of Intellectual and Developmental
Disability 2004;29(3):255-264.
[http://dx.doi.org/10.1080/13668250412331285136]